| | Joined: Jun 2014 Posts: 56 "OCF across the pond" Supporting Member (50+ posts) | OP  "OCF across the pond" Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 56 | I'm 6 months out of surgery, 3 months out of radiotherapy. A lump was found today in my neck. I'm waiting for an ultrasound now.
Hopefully a residual stitch/clip from my neck dissection.
Fingers crossed. I suppose this will be the story from now on.... ups and downs.... uncertainty; question marks. Never able to feel fully at peace.
Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Thinking of you Estelle.
Best wishes
Maureen
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I'm certainly hoping for nothing but good news for you, Estelle.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Fingers crossed my dear... 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2014 Posts: 56 "OCF across the pond" Supporting Member (50+ posts) | | OP "OCF across the pond" Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 56 | Uptown, can I ask - you were T2N2BM0 like me. How differentiated was your tumour? And how long ago were you diagnosed? I only ask because I'm desperately trying to gain a more positive perspective on survival rates. Xxxx
Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
| | | | | Joined: Jun 2014 Posts: 56 "OCF across the pond" Supporting Member (50+ posts) | | OP "OCF across the pond" Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 56 | I get very mixed up with the dates the other way around; I'm a little dyslexic for numbers xx
Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Estelle, as a mathematically inclined personal my survival rate was 100%. Mine was moderately differentiated which meant nothing to me. Either it is or it isn't is what I felt.
I was diagnosed July 18-21, 2003. July 18 I had an incisional biopsy and I was told it looked like TB. Monday, July 21, I got THE call.
I have "worried" about cancer a few times since then but mostly long ago, during the first year or two. It was from the trauma of everything from diagnosis through the first year.
This is the most positive perspective I can give you. My mind made up a lot of things when it could.
Hang in there and try to get your kind past the brutality of treatment. Things will start looking much better. I also lost 85 lbs during treatment and 96 lbs 8-9 years out.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jun 2014 Posts: 56 "OCF across the pond" Supporting Member (50+ posts) | | OP "OCF across the pond" Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 56 | Thank you so much for your reply; I'm very grateful. I'm glad you're 9 years ahead! That's fantastic!
I think getting back to work next Wednesday will be very constructive - take my mind off myself and back on my patients!
Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey Estelle. It could very well be a stitch. Is it hard and moveable but small?
I have a clamp in my neck. It's quite lovely from a frankenstein standpoint. Seriously. It's located in the center of my marvelous neck scar, and it protrudes when my neck turns a certain way. Its a bit smaller than a pea. There are more than one for sure - so says Dr. Irish, and I have some terrific little stitches holding me together. I would probably be super panicked about the little bump in my scar if it was a new discovery but I felt it immediately after my surgery, and actually went to the rads clinic to have it looked at. Then my Surgeon confirmed it was a snazzy clamp. I have a few apparently... and enough staples to hold together a phone book. As the skin on my neck gets back to normal and thins out (edema is gone essentially) I can feel one or two more. If it's bigger and still growing that's when you get concerned. But being a nurse you also know that nodes are sensitive souls and react to all manner of things. (inflammation, infection etc...) so hopefully it's nothing but do have it checked out and good luck. Chances are if you've had a dissection you should be okay. As you also know the further down your neck, (out of the area where the nodes were removed) then it's a little more concerning - There is also the potential for bilateral involvement. So beat a path to his door asap -if for no other reason than to ease your mind and push for the ultrasound and results NOW. Hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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